JUDY WOODRUFF: The number of Americans who provide unpaid caregiving for their loved
ones has been rising, to now more than 50 million caregivers.
The pandemic and the shutdowns have made their work that much harder, further isolating people
in too many cases.
We're going to begin with the voices of some of those who contacted us. There were hundreds
who reached out.
Here is some of what they told us.
And a warning: This segment contains sensitive subject material, particularly for younger
viewers.
DEANNA LUDWIG, Caregiver: My name is Deanna Ludwig, and I live in Port Washington, Wisconsin.
And I'm 50 years old.
STEPHANIE CAMPBELL, Caregiver: My name is Stephanie Campbell, and I live in Ellenwood,
Georgia.
LYDIA "LEE" GIORDANO, Caregiver: My name is Lydia Giordano. I'm 61 years old, and my son
is 20 years old. And I live in Stamford, Connecticut.
HECTOR ALVARADO, Caregiver: My name is Hector Alvarado. I'm 37, and I live in San Jose,
California.
KAREN ROED-RICK, Caregiver: My name is Karen Roed-Rick. I am 66 years old, and I live in
Farmington, Minnesota, a suburb of the Twin Cities.
SHAWN MOORE, Caregiver: My name is Shawn Moore. I live in Kansas City, Missouri, and I just
turned the big 5-0 a few months ago.
KAREN ROED-RICK: I provide care for my 94-year-old father. This is a man who has lived through
a couple of strokes and many heart attacks.
But the COVID situation really throws him off. He absolutely does not want to die alone
in the hospital. And so he restricts himself completely from seeing anyone else and having
any other interaction, other than with me.
HECTOR ALVARADO: So, I live here with my grandma. I have taken care of her since I was a little
kid. But about three years ago, she went into a dementia-related psychosis.
And ever since then, she's required, like, round-the-clock care. I haven't had a break
since the middle of March.
STEPHANIE CAMPBELL: My caregiving began five years ago, actually, to my grandfather, who
is 89. He has dementia, and he has had it now for going on eight years.
DEANNA LUDWIG: Well, my husband is -- he had a massive bilateral stroke about 25 years
ago. He does feed himself, but, other than that, he requires everything.
SHAWN MOORE: So, I am a caregiver to my spouse, who is a 23-year Army veteran who completed
seven combat tours to Afghanistan. And for the most part, with our caregiving, my husband
has chronic PTSD and suicidality, as well as anxiety, major depression.
LYDIA "LEE" GIORDANO: He has adrenoleukodystrophy, and that happened at the age of 7. Stevie
stopped walking, talking and went blind in three months.
He had to get trached at 7 because he almost died, and he's had a trach since he's 7, and
now he's 20. So, constantly with this disease, you have to suction in order for them to breathe
to clear the airways.
DEANNA LUDWIG: With the pandemic, it was really getting extremely difficult before. And then,
any help that I was getting, whether it was someone coming in, that stopped.
STEPHANIE CAMPBELL: Me having to remind him every day that there is a pandemic going on,
it's repetitive to me, but not so much him, because, again, he has dementia. So, I have
to make sure I tell him, granddad, we're not going anywhere today.
So, for a minute, he will take it, and he will try to understand the concept of, we're
staying at home, just like everybody else. But within the next hour, he's saying, are
we going somewhere today?
DEANNA LUDWIG: When they first started talking about the virus, I knew that I was going to,
like, guard him like Fort Knox. Nowhere -- I said, he can't go to respite unless I'm laying
here dead. Do you know what I mean? Like, he will not go to a facility. I will do this.
Whatever.
So, that's kind of changed over time. If they had an opening in a respite facility where
there's some sort of, like, we don't have any cases, but there's a chance, I'd be like,
let's go.
SHAWN MOORE: His mental health has been declining. He's been in a depressive episode here the
last several weeks, and he had a trigger Sunday morning. And he left the house, and he found
himself purchasing a gun.
So, I called the police. And we went into a situation of trying to find him, trying
to track him down. But -- oh, I'm going to get -- so, I have told this -- I told his
therapist today and didn't cry. But I'm going to cry with you.
So, I must be getting to the stage of reality, right, of what really could have happened.
HECTOR ALVARADO: This is one of the hardest jobs I have ever had in my entire life. The
emotional toll it's taken on me has been indescribable at times.
LYDIA "LEE" GIORDANO: And not getting enough sleep is also my other issue, which is very
hard, because, as soon as the sun goes down, it's dark. I try to keep the house as bright
as possible, but my thoughts in my head is about the coronavirus and my son, if it's
going to be the one that takes him away from me.
That's my biggest fear.
JUDY WOODRUFF: So powerful.
And we thank each one of you for sharing your story with us.
Let's talk more now about the challenges and what people need to know.
Grace Whiting is the president and CEO of the National Alliance for Caregiving, which
just issued a report on the state of caregiving, along with AARP.
Grace Whiting, thank you very much.
These stories take your breath away. It's -- what these people are going through, I
think most Americans don't realize.
C. GRACE WHITING, President and CEO, National Alliance for Caregiving: I agree, Judy.
And I -- thank you for showcasing those stories.
I think, to us, what is most surprising is that the pandemic has really removed the veneer,
and now we can see what caregivers are going through. But so many millions of Americans,
53 million Americans have been going through on a day-to-day basis.
And now we're thinking about it, but there's still so much more that needs to be done.
JUDY WOODRUFF: Talk about the toll this is taking, especially now, during the pandemic,
when these folks are isolated, and they are not getting any of the outside help that they
might have been getting before.
C. GRACE WHITING: Caregivers are facing, even before the pandemic, when this study was conducted,
mental health challenges, physical health challenges and financial health challenges.
So, we know one out of five feel isolated. And we know, not from the data, but from our
community, that that is something that has gotten worse since the pandemic. Many don't
have access to respite care, even before the pandemic, even though 40 percent of folks
said that they would find it helpful to have access to respite care.
And we see caregivers reporting that they don't take care of themselves. They don't
have enough time for self-care and that financial strain, nearly half saying that they had some
kind of financial impact, like giving up savings or taking on debt or selling assets, in order
to cover the cost of care.
Now, we don't know for sure from this research, but we suspect that those issues are only
magnified by the pressures we're seeing during the pandemic.
JUDY WOODRUFF: And, as we heard, what is it, the young man Hector Alvarado, said he -- taking
care of his grandmother -- he said he hadn't a break since the middle of March, so over
two months.
And, in some cases, they are facing situations that clearly cry out for professional help,
for psychiatrists, or someone who has direct experience with this kind of severe condition.
C. GRACE WHITING: Absolutely.
And I think one of the scariest things that families are now facing is, when you look
at the legislation that was passed following the pandemic and the congressional action,
a lot of that legislation doesn't help caregivers in the type of situation, particularly if
you're caring for someone who does not have COVID-19.
You may not have job protection. And your sick days, the paid sick day extension, wouldn't
count if you got COVID, and then still needed time off work to care for someone else for
any reason or for COVID, if you used all your days.
So, there's a lot of gaps that I think people are feeling. And to not have had a break or
to have a place to go to get the support you're talking about, I think, puts new and uncertain
strains on several families and threatens their own health and wellness and their ability
to have a career.
JUDY WOODRUFF: And from your perspective, what is the most important thing that needs
to be done now for these caregivers?
C. GRACE WHITING: We need to address their mental health, their physical health and their
financial health.
So, that means expanding access to respite, making sure caregivers are included in care
delivery, whether that's new telehealth that's available for conversations with providers,
and the financial piece, making sure that the protections under COVID-19 for paid sick
day and paid family leaves, that those are extended to caregivers who may no longer have
access to dependent care support because of all the shutdowns and the quarantines.
JUDY WOODRUFF: Grace Whiting, president of the National Alliance for Caregiving, thank
you so much for helping us tell their story and shine a light on what these caregivers
do and why we owe them so much.
Thank you.
C. GRACE WHITING: Thank you Judy.